Hey everyone. I’ve gone through almost this entire thread—all 41 pages—and finally decided to jump in, register, and share what we went through with this absolute nightmare of a disease.
On September 26, 2007, my dad passed away from HCC (hepatocellular carcinoma). To put it bluntly: it was hell. He was diagnosed in just five months.
But let me walk you through the timeline, because it’s a mess;
Back in May of last year, he had what seemed like a totally routine surgery for a fistula and hemorrhoids in his colon. By August 2006, he had to go back under the knife because the wound wouldn't stop leaking and needed more cleaning. After that, the doctor put him on Ketorolac for the pain, which he took religiously for eight months straight until March 2007. Then, on March 12, 2007, he ended up at the Mayo Clinic because of some serious internal bleeding—he was dealing with black stools and vomiting blood. He ended up needing five blood transfusions. After all the tests, they told him he had gastritis from the medication and some minor liver damage, but the doctor didn't think much of it since the liver is supposed to regenerate, right? So, he was sent home. Fast forward to May, and he’s back in the hospital, again due to internal bleeding. More tests, and this time they found a thrombosis in the vein leading to his liver. After an MRI and an ultrasound, the doctor said his liver function had plummeted (his ALT and AST were elevated, bilirubin was up to 13, and GGT was around 280). She actually suspected a primary tumor in his colon that had spread to the liver. They did a colonoscopy and checked his bowels, but everything came back fine. His stomach, pancreas, gallbladder, and kidneys were all okay too; only his spleen was enlarged. Finally, the doctor insisted on a liver biopsy, and that’s when the hammer dropped: HCC (primary liver cancer). He was discharged on May 30, 2007, only to be admitted again on June 11 for his first round of chemoembolization plus Lipiodol. It’s basically chemotherapy but way more aggressive because it’s targeted directly at the tumor site instead of traveling through the whole bloodstream. He actually handled the first treatment surprisingly well. He was able to go home and live somewhat normally, though you have to be incredibly strong to carry the weight of a tumor like that on your shoulders. His second treatment was set for July 11, 2007. He took it, but since the dose of the cytostatic was higher, it hit him hard. Nausea, chest pressure, the works... He was sent home to recover with instructions to return for the third round around September 15, 2007. He started recovering again, getting regular blood work done, and things seemed to be stabilizing. He had dealt with severe anemia earlier in the spring—his hemoglobin was below 70 and iron was at a measly 2!!!—but by mid-August, after a blood draw, we noticed his bilirubin starting to climb. It jumped to 110, even though his GGT had dropped below 200.
A few days later, he checked his levels again and the bilirubin had skyrocketed to 280, so he was rushed to the ER in San Francisco to figure out what the hell was happening. They did an ultrasound and couldn't find any sign that the tumor was spreading; if anything, the tumor looked like it had shrunk significantly after those two rounds of chemoembolization. But he was turning yellow. The doctors advised him to stay in the hospital for monitoring, but Dad refused. He insisted he could just monitor his blood and bilirubin levels as an outpatient. (As if he wanted to spend another two weeks just sitting at home). He got home, and four days later, he checked his levels again—bilirubin had only ticked up slightly to 286. He decided to stay home until mid-September when he was supposed to have his third treatment.
But every single day, he got worse. It is gut-wrenching to watch someone waste away like that while you stand there feeling completely powerless to help. Because his liver was failing, fluid started building up in his body, he was nauseous, incredibly weak... he struggled just to move. By September 14, he ended up in the hospital, and he never came home.😢
He managed to limp his way to the hospital, even though it was a massive struggle, but once he was admitted and moved to the gastroenterology ward, he couldn't even stand on his own two feet anymore. It was devastating. When we first heard the word "HCC," we knew what was coming, but we never expected it to move this fast. In the hospital, his bilirubin just kept climbing until it hit a peak of 670 (the upper limit is only 20). That’s when the doctor told us the situation was dire and we should prepare for the worst—she said we likely had about a week left. We were absolutely floored; you can never truly prepare for news like that. After she told us, we had to go into his room and pretend everything was fine right to his face. Can you imagine how agonizing and soul-crushing that is? That day, he still had the willpower to try and get up; he was forcing himself to move because he knew if he let the bed claim him, it was over. He had the fight left in him, but we knew there was no saving him.😢 😢 😢 even if the test results were looking grim. Honestly, I wouldn't wish that nightmare on anyone. We walked out of the hospital and just sobbed all the way home. The next day we went back to see him, and he actually looked a little better—even the doctor mentioned his bilirubin had dropped by 100 mmol, so there might still be a fighting chance. Can you even imagine that kind of emotional rollercoaster? One minute you're crushed, the next you're clinging to hope. For the next two days, things were just... stagnant. Not getting better, but not getting worse either. Then on Sunday, things seemed to pick up slightly. We spent so much time talking to him, making these big plans for what life would look like once he was finally discharged from the hospital, but it was all for nothing. By the next day, his liver just completely gave out, and then his kidneys followed suit. He fell into a coma and they rushed him over to the ICU. He passed away less than two days later, on September 26th, 2007.
😢 😢 😢
On the day they moved him to intensive care, we managed to get to his side while he was still semi-conscious so we could say our goodbyes. My wife and I were both breaking down, crying our eyes out, and the crazy part was that *he* was the one trying to comfort *us*. His last words were, "Don't cry, I'm just a little tired, I stayed up too late last night."😢
Along with the chemoembolization treatments he was receiving, we tried everything to help his liver recover. We got him some honey cream with propolis, dandelion tea, flower pollen, and some homemade apple cider vinegar from a guy we knew back in rural Ohio.
But unfortunately, the tumor was just too strong.
It was absolutely horrific. But honestly, when I read about the suffering some of you guys go through here, it makes me feel like we actually had it easy because everything happened relatively quickly. It sounds terrible to say, but it’s the truth. The worst part is the prolonged suffering where you're totally helpless. You try so hard to stay strong for him, but where are you supposed to find the strength? Every single day you're bracing yourself, wondering if he'll still be awake in that hospital bed when you walk in, or staring at your phone in pure terror, praying it isn't the hospital calling with more devastating news... it's just endless.
